New to Levothyroxine, would love so information

Hi. I finally had my blood work done after having my son 8 months ago and it came back with my TSH being >500.00 when its supposed to be 0.300-3.700. I really dont know what those numbers mean but, i have a hypothyroid. My Dr. put me on 75mcg of Levothyroxine. I have not at all read many GOOD and POSITIVE reviews about the medication which scares me and causes my anxiety to kick in. Can anyone reassure me or give me their experiences with the medication. Thank you.

25 Replies

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  • Don't be scared by all the negative stories on forums, the vast majority of people are absolutely fine with Levo and they are busy living life. There are some people who don't get on with the standard treatment so have to turn to alternatives but don't assume you will be one of them, give the Levo a go, it will take time to find the right dose but you will get there, be patient as there are no quick fixes, slow and steady is the way to go.

  • Kdutcher31 The TSH range, being 0.3-3.7, and your result being >500 means you are spectacularly over range, overtly hypothyroid and many members will wonder how you have managed to function with that kind of level. Many people can't function properly when their TSH is around 10.

    So you have Hypothyroidism and have been put on Levothyroxine. You probably haven't read many good reports about levo because most people do well on it, probably 80%+ of patients who are prescribed it, but you won't hear about these people because they are doing well and getting on with their lives.

    What you are reading about is the minority, possibly 15%, of patients who don't do well on it.

    I did well on Levo for 20 years, then things went wrong for a few reasons including viral illnesses, excessive stress which probably led to adrenal problems, plus others reasons.

    So for now I think you should relax, have some faith in your Levo and see how things go.

    Make sure you are taking your Levo correctly - on an empty stomach, one hour before or two hours after food. Take it a couple of hours away from other medication and any supplements you might be taking.

    Also, useful to know is that after starting Levo you should be retested 6-8 weeks later, your GP should adjust your dose and retest again 6-8 weeks later. That should continue until your symptoms abate and you feel well.

    Always book your blood draw for the earliest appointment of the day, fast overnight (water only), and leave off Levo for 24 hours. This gives the highest possible TSH which is what is needed when looking for an increase in dose or to avoid a reduction.

    What you can do is obtain your test results (you are legally entitled to them under the Data Protection Act), post them here along with their reference ranges, for members to comment. Get your results every time you are tested.

    Also, get your vitamins and minerals tested. Less than optimal levels can mean that thyroid hormone can't work properly. So you can ask your GP or test privately for

    Vit D

    B12

    Folate

    Ferritin

    Post results for comment and any deficencies or low levels can be supplemented.

    Also, testing for thyroid antibodies will rule out (or in) autoimmune thyroid disease. If your antibodies are positive then you can help reduce them. So to test both types you'll need to test privately as the NHS only test one type. You need

    Thyroid Peroxidase (TPO)

    Thyroglobulin (TG)

    All these tests can be done with a simple fingerprick test from Blue Horizon

    bluehorizonmedicals.co.uk/T...

    That way you will have the fullest picture possible, any problems will show up, you will be able to see if Levo is working for you or whether you might be better off thinking about alternatives.

    It's best to learn as much as you can so pop over to ThyroidUK's main website (this is ThyroidUK's forum) and have a look round. Start at 'About the Thyroid' on the purple menu on the left hand side and work your way down

    thyroiduk.org.uk/tuk/index....

  • H, so agree with SeasideSusie , I was fine on levo for 20 years. Then problems at work and with family caused a mini melt down :) and unbalanced things but settling again now and still OK on levo. So follow the advice on here and all will be fine.

  • Thank you ALL so much for the advice. Definitely makes me feel better. I, however have noticed something new today. I have been urinating seriously about every 30 minutes. And I had not drank even two bottles of water until just recently when I noticed i have been putting out MUCH more than taking in. Could this possibly be a side effect of the medication? Now I am starting to drink more so I do not get dehydrated. My Vitamin D was just a little low. Supposed to be between 30-100 and it was at 26. Everything else was great.

  • Your d is very low. It should be closer to 80. Because it is fat-soluble it can take some time to build up so ensure you take it w some fat. Are you taking a loading dose? A usual supplement of 800IU may not help.

    Have a look here for further guidance: imperialendo.com/for-doctor...

  • Have you had a diabetes test lately?

  • Yes he tested for diabetes as well when he did my blood tests and that came back negative.

  • Well you sure do need it :-) so that is one good thing, and the doc has given you enough to get you started, which is promising. That is the highest tsh I have ever heard of. Mine was 30ish and I thought that was high.

    A lot of people get on w levo. Don't fear it, see how you respond. Think of it as hormone replacement therapy: you are lacking in thyroid hormone, and that's what levo is. If by chance it doesn't suit you you have some other options, but this is the first thing to try.

    The only thing I can think of offhand is that 75 is a slightly higher dose than usual, so if you have any trepidation you can always try taking 50 for a week or so before taking the full dose, but the fact is that is an incredibly high tsh so taking levo is definitely the way to go.

    Good luck!

  • Hello like you I was daunted by all the negative posts on the forums, and I wrote a post like yours. Thankfully, as they have done for you, experienced members advised me not to take too much notice of all the doom and gloom. Look at other sites too to get some perspective on it all BUT always take note of the knowledge of the core members on here; many seem to know more than our doctors !

  • Ps my observation is that there are some members whose experiences with doctors must have been so negative that it has coloured their view about thyroid treatment generally and unfortunately this is what keeps on being relived through their comments.

  • Very simply, Levothyroxine has given me my life back.

  • I take levothyroxine alone.

    I think I am doing pretty OK on it. Obviously I am well aware of, and have access to, the liothyonine/T3 and desiccated thyroid products, so if I felt otherwise I could do something about it.

    Yes - people vary.

    Quite a number of people who end up switching from levothyroxine did initially feel it was helping. The number who do not get on with it from the very beginning is, I suspect, quite small - a very important minority, but still a minority.

  • I was started on extract nearly 30 years ago which is called NDT now. I was fine on it but the NHS gotvit from Canada and a prolonged strike held it up so I went over to Levo. Found it fine as well! Continued to be until I reached menopause and tried everything I could be still holding me back a little so gone. Ack to NDT. Lots are good on it so don't join a forum and some hear good things andcmove without giving Levo a chance! Often they find they are no better!!! Everything in the thyroid world moves slowly, it's not advisable to try and speed things up because it doesn't work like that and that can make you poorly.

    So the medication is starting to work for you with the frequent bathroom visits but make sure you keep drinking so as not to get dehydrated. A lot of the extra weigh we have gained is fluid.

    Read all you can onthe Thyroid Uk site and shout out if you don't understand anything.

    So glad you have found us and welcome!!!

  • Pregnancy can lead to hypothyroidism and sometimes it may run its course.If not you will need to take the hormone for life. My TSH was over 100 and came down very fast , yours ,even though much higher will come down quickly over the next few months . The medication is a synthetic hormone that replaces what your thyroid has stopped producing. As others have said the vast majority do OK on levothyroxine. Some have problems with the fillers etc that are added to the different brands and have to change brands. Some need to add liothyroxine (T3) and a few need T3 only but the NHS is stopping T3 on cost grounds .

    But you must give it time .Some of my symptoms vanished within a couple of weeks but it was about a year before I felt I was just about back to normal.

  • Hi, I have been on 50mcg of Levothyroxine for about ten years, and although I know it is a small dose, I have had no problems with it. Remember you don't usually hear from those with no problems, only people with problems post.☺

  • Thank you all so much for the positive feedback. I didnt realize my number was that high lol

    i was functioning it was just difficult. i was even working out for 2 weeks until my legs started cramping up and i started feeling weird. I was originally 127lbs when i got pregnant back in september and now I am at 175 and I cant lose the weight for the life of me and my biggest fear is the medication making me gain weight. im definitely feeling better today on day 4 of my meds than i was on day 2. Also, i started my Vitamin D and i have to take 2000IU a day. These pills are 1000IU, can I take two at once or should I take them at sepereate times?

    I love being a part of this group. You are all so supportive and welcoming with Positive feedback which is something I need. Especially with having anxiety.

  • the medication won't i crease your weight it should help, which could be one reason you are peeing so much as some of the weight could infact quite possibly be water retention. See how you go for a couple of days with the peeing, if it doesn't ease up see the doc again. It would be helpful if you could post all your test results as the doctors fine or good mean nothing lol.

    I've been on levo over 25 years now and do relatively well most of the time, I've had a few blips when other things have been going on in my life and when my other levels have been low, getting everything optimal is paramount, not just fine or good :-)

  • I have not had to pee as much besides that one day. So far so good I'm just feeling more bloated since I've been on it. What can I do about that? Also, idk how to upload a photo here of my results so that's why I haven't posted that

  • Hi all! I have a new question. Is it possible for the medication to make me feel moody or irritated for basically NO reason at all?!

  • You have to remember that the medication is hormone based and is suppose to change your hormone levels within your body, as it begins to work you may welll find numerous things happening whilst your body adjusts to the changes, mood swings are of course possible but can also be from many many other things. i can't remember when you started your medication but you should have your bloods done ( early morning appointment, prefereably a fasting one and no meds before it) to see how the dosage is affecting your levels, around the 6/8 weeks after the start of taking meds or a dosage change. Hope this helps

  • I have only been on my meds for 1 week today. lol so I guess i need to just relax when i notice some changes and give it more time. My Primary wants me to have my levels rechecked in 3 months. I have also heard quite a bit about Hashis or something like that. i called this morning to see if he was concerend about that and if I could be tested for it considering my TSH was >500.00

    my main concern is being well for my boys and I cant do that if im not well for myself.

  • I have hashimotos, what you need to do is try to stop worrying so much and just let things take their course for a few weeks, it took time to get ill it will take time to start feeling well and your body will go through so many changes , stress is bad for people in general and more so people who are not well to start off with. 12 weeks is too long really to wait for a blood level check when you are just starting out on this journey, I would book in at 8 weeks if its possible.

  • So my Drs office just called me back and I as well have hashimotos. I will be on my meds for 2 weeks come Thursday. I'm noticing lots of different changes but I am just taking them day by day. I'm not worrying about them or anything. I know I have to give myself time to let the levo get adjusted in my body.

  • thats good that you are beginning to relax about it all a bit more as stress really doesn't help. Of course, feel free to ask more questions if anything is worrying you, its better to have a discussion about anything than sitting worrying alone, fingers crossed you will start to see some improvements very soon

  • Hi! Thanks for keeping in touch with me. I really appreciate it. I have been noticing lately that my lower lower back, hips and legs hurt. Its a weird kind of hurt. like almost a tired hurt. is this normal in beginning stages of levo?

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